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Background: Mental health conditions are common among individuals with intellectual disability. Under recognition of mental health disorders leading to unmet treatment needs is common in this population. This article addresses one major contributing factor, the lack of cognitively accessible self-report measures for individuals with intellectual disability. Method: In this literature-informed overview of the state of the field, we discuss the need for, and complexities of, including individuals with intellectual disability in mental health assessments. Results: With appropriate supports, many individuals with intellectual disability can respond to mental health questions. We discuss evidence-based strategies to make mental health assessments more accessible. Conclusion: We highlight the need to engage individuals with intellectual disability to provide first-hand information about their health and well-being. New instruments and research procedures should be developed in partnership with individuals with intellectual disability. Self-report may be essential to advancing the science of mental health research. [This article was co-authored by the Nisonger Center RRTC on Health and Function.]

This qualitative study was carried out in Spain with the aim of identifying the changes that the health system should make to improve healthcare access for older adults with intellectual disability. Three hundred and sixty-nine family members and professionals expressed their opinion on how healthcare access could be improved. Participants responded to two open-ended questions included in a general survey about the health status of older individuals with intellectual disability. Most informants were women and professionals who had known the person with intellectual disability for more than 12 months. A system of categories, which showed good inter-rater agreement, was developed to analyse participants' written responses. Both family members and professionals emphasized the need to improve disability training for healthcare practitioners and highlighted the urgent need for flexibility in the structure of a healthcare system that currently overlooks the specific needs of this vulnerable population.

Background: The intellectual disability field has learned about the lives of people with intellectual disabilities (ID), largely from the perspective of their family and caregivers. Information from caregivers has been critical to scientific advancement, especially when caregivers are engaged on behalf of individuals with significant language impairment. On the other hand, the perspective of individuals with ID themselves is critical for internal subjective content such as thoughts and feelings. Methods: Participants were 90 adults with ID and a proxy of their choosing. Results: Overall, self and caregiver report were significantly related for subjective health but varied for physical activity, social support and stress. Conclusions: These findings add to the growing literature establishing the importance of considering the self-report of adults with ID, particularity when the subject matter focuses on internal thoughts or feelings. Clinical considerations for the use of self and proxy report are discussed.

Background: Mental health conditions are common among individuals with intellectual disability. Under recognition of mental health disorders leading to unmet treatment needs is common in this population. This article addresses one major contributing factor, the lack of cognitively accessible self‐report measures for individuals with intellectual disability. Method: In this literature‐informed overview of the state of the field, we discuss the need for, and complexities of, including individuals with intellectual disability in mental health assessments. Results: With appropriate supports, many individuals with intellectual disability can respond to mental health questions. We discuss evidence‐based strategies to make mental health assessments more accessible. Conclusion: We highlight the need to engage individuals with intellectual disability to provide first‐hand information about their health and well‐being. New instruments and research procedures should be developed in partnership with individuals with intellectual disability. Self‐report may be essential to advancing the science of mental health research. [ABSTRACT FROM AUTHOR]